Previously, I talked about having a neuroma. It used to be a little irritating, but it really didn’t affect my lifestyle much. Things have changed enough that I want to share the situation with other amputees and those that love us. Let’s start with the basics. What exactly is a neuroma?
The Amputee Coalition of America defines it as: “A neuroma is a collection, or bundle, of nerve endings that forms under the skin of your residual limb. Think of it like a tangle of hair. It can become very sensitive, especially if the tangle is pressing against your prosthesis”.
The Association of Children’s Prosthetic-Orthotic Clinics (ACPOC) gives this definition: An “amputation neuroma” is a nonneoplastic tumor occurring at the central end of a cut nerve as the nerve fibers or axons grow from the open proximal end and become incorporated in fibroblastic tissue derived from supporting elements of the nerve or from adjacent traumatized muscle or fascia. This proximal neuroma begins immediately after the laceration and requires several weeks or months before becoming a mature, circumscribed, nonproliferating mass. The neuroma may become firmly attached to surrounding soft tissue or bone, resulting in a traction stimulus each time this segment of the extremity is moved. Traction, percussion, or emotional stimuli cause a painful, unpleasant sensation. When the neuroma is stimulated, paresthesias, usually described as “pins and needles,” occur along the course of the normal dermatome or myotome, in addition to pain produced directly at the point of pressure.
Massachusetts General Hospital uses this description: “A neuroma is a disorganized growth of nerve cells at the site of a nerve injury. A neuroma occurs after a nerve is partially or completely disrupted by an injury — either due to a cut, a crush, or an excessive stretch. The neuroma is a ball-shaped mass at the site of the injury, which can be painful or cause a tingling sensation if tapped or if pressure is applied. Although not always the case, a neuroma can be extremely painful and can cause significant loss of function for the patient by limiting motion and contact with the affected area. Neuromas can occur after trauma and even after surgery in any region in the body since most areas have nerve fibers providing feeling. Painful neuromas are common after amputations in the hand and upper extremity (arm) and in the lower extremity (leg)”.
I explain it in a simple and less wordy way. It is a big ball of tightly intertwined nerves. Mine is protruding from the bottom right side of my residual limb. When it is touched or pressed on, the sensation can be extremely painful. Even in a resting position, my “foot” (the bottom of my residual limb actually feels like my foot) constantly feels like it is asleep. I have constant pins and needles, although most of the time it is tolerable.
This is my limb. You can see there is a prominent bulge on the right side. That is the neuroma.
WARNING: THE NEXT PICTURE IS A GRAPHIC PHOTO OF WHAT AN ACTUAL NEUROMA LOOKS LIKE UNDER THE SKIN.
The thing with my neuroma is I had no idea what it was in the beginning. No one warned me that “Neuromas are found in more than 90% of lower extremity amputations, of which 30-50% are pain-generating for the patient” (according to the U.S. National Institutes of Health – Clinical Trials). It is important to note that according to ACPOC: “Not every amputation neuroma is painful. Postoperative percussion of an amputated nerve end causes local pain and exaggerates painful phantom in the anatomic zone of the nerve. Gradually, the neuroma becomes more tolerable, provided that excessive stimulation from persistent traction or pressure does not occur” When I first started feeling the tingling in my “foot”, the doctor told me it was a normal feeling and nothing to worry about. So, for 3 1/2 years, I was under the impression that all amputees walked around with tingling or pins and needles in their residual limb. Finally, after several visits to see my Prosthetist (Rich Wall – Hanger Clinic in Bellevue, WA) because I was having problems with my socket fitting comfortably, Rich suggested it may be a neuroma.This was over a year ago.
Now, you would think it would be easy to go see a doctor and have it diagnosed and taken care of, right? Not even close! Apparently, not many doctors are willing to take on a patient that has the bone issues I do and even fewer are willing to take on an amputee with bone issues. I am not willing to bounce around from doctor to doctor. I wanted to find a new doctor to replace my surgeon who retired (he did every one of my surgeries, including the amputation from 2001 – 2011). I know I will need knee replacement and probably several other surgeries and I want a doctor who will be with me through them all. With Rich’s help, I found a doctor who would see me. My appointment was last week and I got good news and bad news. The good news was he was willing to take me on as a patient….the bad news was he was willing to take me on for everything EXCEPT the amputation site and the neuroma. Then, he gave me more good news. He would refer me to a local doctor who was very well-known and specialized in amputations. Then, more bad news. He is so highly regarded that the first appointment I was able to get with him is December 1st. That is 4 1/2 months away!
After researching the subject to see if there was anything I could do while I wait, I was surprised to see how many ways there are to treat a neuroma! There are three routes you can take: Non-medicine, medicine and surgery.
Non-medication options include (according to the Amputee Coalition of America):
- Ultrasound, which is essentially a machine that uses sound waves to generate heat within a body part; it can help increase blood flow so that inflammation and swelling can be decreased
- Massage, which also helps decrease inflammation and helps desensitize your residual limb to touch
- Vibration, which creates a mild shaking to contract muscles, to decrease inflammation and pain
- Percussion/finger tapping at the point of pain, which also helps desensitize your residual limb
- Acupuncture, manipulating thin, solid needles that have been inserted into specific acupuncture points in the skin
- TENS (transcutaneous electrical nerve stimulation), which produces a mild “pins and needles” sensation, overriding some of the pain that your body is producing.
Modifying the prosthesis socket to prevent rubbing at the sensitive part of your limb may also be helpful.
I have not tried ultrasound, TENS or acupuncture. Massage, vibration and finger tapping takes the edge off and makes it a little more bearable for me. Unfortunately, the relief stops when the rubbing or tapping stop, so unless I plan on spending the rest of my life in a chair rubbing my leg, these are not viable options. Rich has modified the socket for me by putting an indent onside the socket to prevent rubbing.
Because neuromas are made up of nerve endings, possible treatments include medications that help with nerve pain, such as:
- Non-steroidal anti-inflammatory medications
- Specific antidepressants and anticonvulsants that have been found to be effective for nerve pain
- Steroid injections.
I have tried several medications, including over the counter anti-inflammatory medications; Gabapentin (Neurontin) which is a medication used to treat certain types of nerve pain and multiple pain medications. I discovered that using an Icy Hot roll-on and covering the neuroma area helps to dull the pain to the point of being tolerable. I recently found a “recipe” for blend of essential oils that do the same thing that Icy Hot does, but works a little better.
The final option is surgery, which we believe is what I will need do to the size, location and severity.
The surgical procedure seems fairly simple and straight-forward. According to Massachusetts General Hospital, “The neuroma is then excised, and the nerve is placed in an area in the deeper tissues where it will not receive frequent direct stimulation (from pressure or contact) during normal activities. Often, medications are used in conjunction with surgical treatment to modulate the body’s response to the neuroma pain. This often enhances the effects of surgery”. ACPOC states: “Complete revision of the amputation stump can be avoided if the nerves are not adherent to bone or do not show excessive involvement in the terminal scar. Mobilization of the flaps can be avoided by isolating the nerves about 3 inches proximal to the end of the stump and resecting a 1 cm segment from each nerve.This technique has been successful in eliminating the painful neuromata in both below-elbow and below-knee amputation stumps”.
Unfortunately, since I cannot even get an appointment until December, I most likely will not receive any treatment until after the first of the year. That means months of discomfort and even pain. I would love to blame the doctor that told me it was normal……or the doctors who refused to take me on as a patient….or the medications that didn’t work, but the bottom line is I can only blame myself. I knew there was something wrong, but I didn’t pursue it or get a second opinion until it was really too late. If you only take one thing away from today’s blog, let it be LISTEN TO YOUR BODY! I have said it over and over and yet, I second guessed myself. I am not just saying this to amputees. Everyone needs to be become their own best advocate! No one knows your body better than you do. If you are not comfortable with what a doctor tells you, do not be afraid to get a second opinion. I can’t help but wonder how much pain and trouble I could have saved myself if I had gotten one.
If you are an amputee and have lots of discomfort around your socket, have tingling or pins and needle feelings or anything that just doesn’t feel right. Talk to your doctor and prosthetist ASAP!
As always, thank you for allowing me to be a part of your day.